Hello Everyone,
Good news to report!!! First of which is that his platelet count continues to rise, as does his hemoglobin count. Today is day three of his infections coming back negative, and his blood sugars continue to remain stable with the medication he is on. He has to finish his course of antibiotics which has 11 more days. So...what this means is that IF, and I use that word cautiously :), he continues on this path that he is on, we could be coming home in about two weeks!!!!!!

This picture cracks me up. He's always had a little spot on the back of his head that we called his "bald spot," but this makes it official. He's been in the hospital too long!!!

Elijah is continuing to do a little better today. He was awake alot more and happy for the most part. His platelet count has crept up a little on its own and the antibiotics are starting to kick in and fight the infections. He is still eating well and they cancelled the tube placement for today...yay!

As you can see, Elijah is feeling a little better today. He has once again, started eating and keeping it down. It seems as though he knows whenever he is scheduled to get a feeding tube placed, and decides to eat !! They will be replacing the PICC line tomorrow, which will hopefully help him to fight the infection.

Hello everyone.
I'm sorry we didn't post yesterday..It was a very eventful and trying day to say the least. As I'm sure most of you know, we are Jehovah's Witnesses and do not accept blood transfusions. For those of you who may not know, or understand our views regarding the matter, I will try to explain a little of what the Bible says, and why we feel the way we do.

There are some things that are common today that we, as Jehovah's Witnesses, do not take part in, one of which is the use of blood. We do so because we govern our lives by God's Word, and these things prove to be a safeguard for us. Acts 15: 28,29 says, "For the holy spirit and we ourselves have favored adding no further burden to you, except these necessary things, to keep abstaining from things sacrificed to idols and from blood ... If you carefully keep yourselves from these things, you will prosper. Good health to you!"

This brings me to yesterday. I said in my previous post that Elijah has a blood clot in his leg. He has not been his normal happy self, and wants to be held all the time. I think he has figured out that when he is in our arms, it us usually the only time he is not being messed with. He was getting a shot every 12 hours of a medication called Lovenox, which is a blood thinning medication. He had blood drawn and when the labs came back, they showed that his blood count is very low. His platelets, in particular, are much lower than they should be. This is directly due to his blood clot, as well as the fact that he has three separate infections growing in his blood stream. In most situations, this is the point where the doctors would perform a platelet transfusion. We, as Elijah's parents, had to speak up and let them know that we would not consent to that being performed. This, of course, was not a decision that we took lightly. The doctors here at CHOP have been extremely understanding and cooperative in regards to our beliefs about blood transfusions and said that they would wait until the next day when the attending doctor was here and we could discuss it then. We called Brother Webster (who's on the Liaison Committee here in Philadelphia) and we were able to set up a meeting with all of the doctors who are involved in Elijah's care. Among them were the Hematology doctors, as well as the Endocrinologists. In short, they said they would give him about two more days to see if his body would, with the help of antibiotics, start to turn around and build up his platelet count on it's own. Unfortunately they have been put in a position where they must act from a legal standpoint with regards to giving Elijah a blood transfusion if it becomes an emergency. Later that day we were involved in a teleconference with a Judge, and both sides gave our opinions as to whether or not Elijah should get a blood transfusion, if the need arises. Joel and I did our best to express our views, and Brother Webster was there with us to help us along the way. He proved to be a big emotional support for us. Needless to say, it is one of those moments that I think we all hope and pray we will never encounter in this lifetime. The Judge, in the end, issued a court order to the hospital that hopefully at this point in time, will never have to be used.

So that is where we are now, and I'm so sorry this post is so long. I feel like I am still leaving things out. No words can express how much we appreciate EVERYONE who is praying for us, and keeping track of our journey. I know that we will come out on the other side...I just hope it is sooner rather than later. Elijah is a strong little man and I know that if any baby can endure what's he's been through, I can only imagine how strong he will be once he starts to feel better.

Love Always,
Joel, Eden and Elijah Thome

I knew when I wrote the last post about Elijah having two good days in a row that it was too good to be true. He spiked another fever yesterday of 102 and hasn't eaten too much since then. On top of that, his left leg has been bigger than the other leg for about a week and a half now, from where the line(IV) was in his thigh. They did an x-ray and an ultrasound on it yesterday to see what was going on, because the swelling hasn't gone down at all. The ultrasound showed that he has a blood clot in his leg. The good thing, is that the clot is probably the cause of the infections and fevers (at least now we know). The bad thing is that not only is it dangerous, but in order to treat it, we will need to give him two shots a day of a blood thinning medication for at least the next six months. Unfortunately, his Hyperinsulinism is the least of our worries at the moment. Our goal now is to treat these other issues that have presented themselves. I've learned that this has been, and will continue to be a journey of ups and downs. Hopefully I will have more ups to report in the near future:)

We get to wake up to this every morning :)

Hello Everybody.
It is Tuesday evening and today was another overall good day. Elijah is still eating a little better and keeping most of it down. He is still feverish from the infection, but hopefully that is very temporary. My Mom flew in today...what a savior she is already!!! Joel and I got to get away, and ate dinner at a neat resturaunt downtown. It is so nice to have a piece of home here in Philadelphia. Well it's been two days in a row that Elijah seems to be heading in the right direction; finally seems to be turning a corner. Thanks for caring enough to check the page... I hope it is helpful.
Love, The Thome Fam